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The Many Faces of Paralysis

Today we are talking specifically about paralysis, and those people who use a wheelchair full-time as their only way to get from point A to point B. I am not talking about great-grandma and her bunyons and why she loves those electric carts at Wal-Mart.

There are SO many misconceptions about paralysis. That is okay, because I thought the same way before I became paralyzed. I remind myself of this often and give patience as I give understanding. My previous definition of paralysis: The paralyzed person cannot feel or move their legs. That sounds pretty good doesn’t it? Now stick with me as I tell you the real story. There is not one single paralyzed person that is the same. That is the truth. We are like snowflakes. Two people can both be paraplegics, and have completely different ways that paralysis affects them.

Our nerves control muscle movement, they can feel pain, temperature changes (hot or cold), and they can feel vibration. If you have ever had a neurological examination, they pricked you with a pin, put a metal object to you and asked you if it was hot or cold, and they would make this metal thing vibrate and hold it up to you and ask you if you could feel the vibrations. They would also ask you to move this or that to check your muscle strength and movement. This is because they are checking all the facets of your nervous system.

Paralysis is caused by a disruption in the signal from your brain to your body parts. Brain damage (like cerebral palsy, a brain injury or a stroke) can cause paralysis. Spinal cord damage (Spinal Bifida, Transverse Myelitis, broken back or neck) can also cause paralysis. These things all disrupt the signals that the brain is trying to send. The signal goes out, but it cannot complete its journey as the damaged area of the spinal cord disrupts that signal (like a bridge that is out on a highway).

This is where it all gets tricky. Depending on where the spinal cord is damaged, and how damaged it is, determine how your paralysis will affect you, and how you will be classified. If just your legs are affected, you are considered a paraplegic. If all 4 limbs (legs and arms) are affected, you are considered a quadriplegic.

The higher up your spine the damage occurs, the higher level of paralysis you will have. The spinal cord is divided into 3 levels – around the neck is the “C” (cervical) level, from shoulders to waist is the “T” (thoracic) level, and from about waist down is the “L” (lumbar) level. Each vertebrae within that level is numbered. For example, Christopher Reeve (Superman) broke his neck at the highest level and was classified as a C1 (cervical level, first vertebrae) quadriplegic. He had no use of any of his muscles from his neck down, used a ventilator to help him breathe, and had to drive his power chair with mouth device called a sip and puff.

There is also a difference in your classification whether you are considered a “complete” or “incomplete”. If you were stabbed in the back, and someone completely cut your spinal cord in two where it was not connected at any point, then you are a complete. A car accident can do that, or someone who has been shot (or stabbed). Also, if your spinal cord is still connected, but you have no movement or sensation at all below your injury, then you are considered a complete. My spinal cord was damaged because of inflammation that surrounded my spinal cord and damaged it. It is still connected, but the nerves were killed. I am considered an incomplete because I do have some movement below my level of injury.

Within these classifications, however, there is still a very broad spectrum. I have a couple friends who are also C5-C7 quadriplegics, but our abilities are different. There are quadriplegics who cannot use their hands, but are able to take steps. There are paraplegics who have enough muscle strength in their legs to walk with forearm crutches. I knew a quadriplegic who was injured in World War 2 that was paralyzed from his neck down. He could not move a muscle, but he had full sensation. He knew exactly where you would touch him. There are others that can move some muscles but have no sensation and don’t have a clue that their feet are even on the floor.

Although we are paralyzed, many of us deal with pain and spasms on a daily basis. Because are nerves have been damaged, we deal with a lot of raw nerve pain. That can feel like burning, painful pins and needles, sharp stabbing, electric shocks, a tight banding around us, and a multitude of other manifestations. Some of this pain can stay constant and other times it is brought on by other things like a urinary tract infection, needing to use the restroom, someone touching your leg, or a bumpy surface we are rolling on.

Spasms are a different story as that is our legs or arms jumping and moving uncontrollably. That is the paradox of paralysis – our body will not move when we want it too, unless you have spasms and then it will move when you do not want it too! Some people have spasms so severely that it throws their bodies out of the wheelchairs. Your legs will jump, or stiffen and shake depending on different things. There are medications to help calm these muscles down, but some of us feel that the spasms are worth the aggravation they cause us. They stretch your legs and work muscles that would otherwise atrophy away to nothing.

My spasms are positional, meaning that I don’t spasm much unless I get in certain positions, or go over bumpy surfaces. I know those positions and try to avoid them in public. However, there I days I am just “jumpy”. I don’t know why unless it is weather, tiredness or stress related. On those days, the phone can ring and my legs will jump around. Here is a video of my spasms, and my range of motion exercises that I do every day.

My official classification is C5-C7 (cervical, 5th – 7th vertebrae) incomplete. I have no sensation from my upper ribs down. I can also wiggle a couple toes on a good day.

What you need to know from all of this?

It takes a lot of muscles working, from abs, glutes, hips, thighs, hamstrings, calf, feet, etc., to stand and walk. A paralyzed person may have from none to some of these muscles working. Do not think that if you see a paraplegic and they move their foot, that they are a fake. They are not. If you see their legs move, don’t assume they did it and they have been miraculously healed. It was probably a spasm from rolling over that lip in the doorway. And if you see someone massaging their leg and you think that is silly since they can’t feel it, be understanding. There is probably an invisible dog named nerve pain that is tearing a hunk off of their leg and he has not let go for over an hour.

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27 thoughts on “The Many Faces of Paralysis”

Do you have an email to send prayers onto Jason and Mendy. I do not know them but came to hear of their news thru someone in my church who went to Bible College with Mendy. I would like her to know that people she doesn’t know are praying for her.

Hi, I just recently married my husband whom I was in courtship with for a year and almost a half. He is a paraplegic. He says I’ve helped him so much. I too was a paraplegic but thru allot off physical therapy I’m walking I have my none walking days but..I was told by my doctor a Lt.Col. Learn to live with it that was after my first child in 1987. I told my husband I can’t place him in the same category as me. Every one is different. My children still take care of me and told me he’s not as bad as they thought it would be moving him from chair to bed etc.. Your story helped them allot especially with the spasm part because I still get them and he does to. But he’s still in a nursing home we’ll be moving to his state soon it’s a helll hole and I’m extremely worried about him and we are expecting in Aug.. I understand him and when he’s in pain. With me being a disabled veteran and him a civilian despite his condition he cream get to me a real diagnosis. He was told he had MS and then a stroke and then just a year ago he was told by a neurosurgeon that it was a brain injury. He’s only received physically therapy for a month they dropped him and broke his knee. After seeing you I know that’s what he needs. I’m so grateful to toy for such information and for sharing. Stay strong young lady.

Thanks for this article, it has alleviated some of my ignorance. I’m now friends with a paraplegic who had spinal damage in a car crash when he was a teen, and is now in his 30’s. He has said that his feeling has expanded down very slowly each year, but still is obviously very paralyzed and in a wheel chair. He also feels pin pricks in his toes and hot/cold temps on his legs.

He hasn’t been able to afford to see a spinal surgeon or do physical rehab, so I was encouraged that there may be hope for him. However reading your article, it sounds like these sensations are very normal and not an indication that the spinal cord could be repaired through either surgery or rehab.

Hello.
I know this is going to sound stupid, but I am really stepping out on a limb and asking for advise and help. Can anybody talk to me?
I have been in denial and angry for the last year and a half; and I realized that it has partially been because my providers cannot be specific about why I can’t since my car accident. I have lost almost all of my bi-lateral lower leg/feet, sensation and function; yet I have feel pain, numbness & tingling, sharp zingers along the back of my legs, as well as sharp, chronic pain & spasms in my lower back, down both my legs and feet. I know that I have been diagnosed with paraplegia and that I have a neurogenic bladder. Since I was on the job for the Federal government when this happened, their insurance company has been sending me to their contracted specialists to write reports to say that my condition may not be paraplegia or in fact a sole result of my car accident. I keep telling them that I was pain, symptom and medication free: as well as free of disease and illness; and I walked and lived a very active and healthy life before my accident; but that hasn’t meant anything to them.
I keep going to their “hired gun/government bought” specialists, and they just keep doing these neurological exams on me. I am so tired of not understanding the correlation of what they think I should be telling them and how I feel. I don’t know what they are thinking when I go through the exam. They never discuss their “opinions” with me because they are only allowed to discuss everything with the insurance company and the it is up to the insurance company to provide me with a copy of their reports.
The insurance company tells me that they know that I have major depression and PTSD; therefore, they think I have enough to deal with. I think that they are trying to dismiss me from my medical claim with them.
I just hired an attorney that will look into the disclosure matter for me; and handle some of the bureacracy for me.
I don’t know anyone that has paraplegia that I can talk to or ask questions to. I have trouble sleeping and I would really like to know if anyone can talk to me about what I need to understand about my condition.

I think it is a good idea to get a lawyer to help you. They are familiar with those who try to get out of their responsibilities. Where do you live? You should connect with a support group in your area. Let me know where you live, and I will try to get you connected!

I’m partially paralyzed on my right side of my right leg all the way down to the right side of my right foot…..occasionally I get these really sharp pains that only last about a second but feel like a bullet….do you know why this happens?

I had a rutured disc, that penetrated my spinal sac (T10-T11) I can feel touch of my legs, but I can not determine hot and cold. With medicines, my nerve pain, and spasms are minimul. I am paralyzed from the hips down. Thanks for your article, I enjoyed it very much.

IVe read what was said but I’m a T10 to T12 complete I suffer with pins and needles 24/7 and have done for the last 13 years I had an operation in 2000 to straighten my spine which was a success but had an MRI a year later and had to have another operation in 2002 to remove my implants and this is when my pins and needles started I say they caught a nerve or something when they took my implants out but the hospital swares they didn’t catch anything but when I saw my latest MRI the base of my spine is still sitting at the bottom of my back doing nothing and I’m wondering if this could be sitting on a nerve or something causing me this pain the hospital have no idea as to what’s causing this I would like some feed back as in has anyone else suffered similar simptoms to me thank you for any input

My son was a passenger in a car accident in 1995. He’s a semi-quad, C-7, T4 level. Fortunately for him, he never has suffered from pain. He does have a Baclofin Pump for muscle spasms. My question: He has recently been having severe nerve pain at the C-1 level. Some days it doesn’t bother him and like today, he’s really suffering. The pain either goes to the base of his skull, off to his shoulder or down his back, but now, it shoots into his eye socket. He’s scared that it will make him paralyzed from C-1 level. Does anyone know what and how we can do for this new pain to him. I know it’s nerve pain but what do I tell him. He’s really scared. Thank you.

I am a t10 diagnosed incomplete but I think I’m a complete I got shot 5 yrs ago nov.3rd 2010 after the Giants parade in San Francisco I also have something called ho heterotrophic ossification having this besides from getting paralyzed really sucks basically 5 yrs later my bones in my hips and back have gotten so big that I’m in pain all day also I got scolioses the ho has limited my flexibility mobility and my spasms on a scale from 1-10 is about a 7 I never would ever imagine this is wat people in wheelchairs deal with so for all those that are injured and deal with this my hat is off to u people don’t appreciate life and wat they have until it is taken away from them me included so on a positive note I got a call from a doctor two days ago and am gonna try electrical stimulation so I pray this helps in any way possible

Pain in the winter especially is very common. The cold and barometric changes are hard on our bodies. I like to stay off of drugs so I have found that heat on my feet and neck and hands help me. Also, long hot showers (or a hot tub) feel very good. And not allowing yourself to get too cold in the first place as it takes a tremendous amount of time to get warm afterwards, is a good prevention. Drinking a hot tea or drink helps warm the inside also.
Thank you for being a sweet friend and caring for her comfort!

Hate nerve pain… Also I have pain in areas where my muscle strength has been compromised, caused added stress on joints and surrounding muscle… I say that a day with no pain is a blessing… And exceedingly rare those days are!
I have an inflammatory disease of the nervous system, meaning that I have symptoms pretty much everywhere in my body, including my face, eyes and ears…

My extremities will get very cold, even in a fairly warm place, taking ages to warm up again… I have a similar intolerance for heat…

How did you become paralyzed? I’m thankfully not, I was in a severe automobile accident that gave me severe wiplashes, and the vehicle was only inches from flipping. I have nerve damage and still seeing my doctor. I get numbers and tingling, as well as the pain.

I am currently writing a book where the main character is paraplegic, brain damaged and epileptic all as a result of a car accident. I am, and I thank my lucky stars for this, none of those things. Reading blogs and the comments like these is a real eye opener for me as an able bodied person who has no contact and doesn’t know anyone with paraplegia. The story is that the main character loses his disabilities during his epileptic seizures and is thrown into situations that he has to cope with in the knowledge that in reality he is disabled. A zombie apocalypse, as a vampire hunter, private detective, that kind of thing. He writes a journal where he records these events but also uses it to describe his day to day life in his true reality.
I am trying to keep the tone of the book light because, trying to put myself in the shoes of the character, I believe that most of the time I would try to deal with things in his real life with humour but it really helps to be able to look at a blog like yours to try to understand how things like pain levels, depression etc can affect a person with outwardly obvious disabilities but with more hidden problems too.
In the end my characters attitude is that he is still a human being with the same needs and desires as anyone else, the same sense of humor as he had before, the same need for self esteem and desire for independence while at the same time making mistakes and being, like everybody, a flawed character who can sometimes do or say entirely the wrong thing,
I want the reader to find the character likeable and to be able to sympathize with his situation without making it what essentially defines him as a person.
Is that an attitude to life that chimes with people in his, your or their situations?

Hi I was recently diagnosed as paraplegic as a result of piriphial nerve damage caused by a vitamin b12 deficiency and as with a lot of the other people on this blog have suffered a lot of ignorance towards it when I have muscle spasms in public and keep having the same conversation with the same people over and over again about my condition that they really can’t understand (they believe if you haven’t broken your legs or have been in a car accident then your legs should work -_-) which can be really frustrating as back in April this year I was finally able to stand with aids keeping my knees pushed back and my trunk in a slightly bent position but that was fine to me as I have 3 kids and learning to live and use that new feature improved my living situation but people can’t understand how I can stand at all when I have no sensation but don’t take into account im not just jumping up and standing like them it takes a lot of work concentration and causes me severe pain in my back (I have chronic pain so I have learned to deal with it) im just wondering has anyone else had the same happen to them? Because since my b12 has dropped again I can no longer stand and now my muscles have nearly completely wasted im currently waiting to go to the hospital of neurology and neurosurgery in queens square London where there is a specialist over my condition and im worried that I may deteriorate more and never stand again now that my muscles have wasted, if anyone has any knowledge or a similar situation please tell me your story and what you think will happen, thank you!

Sense Nov 1 of 2015 I have not felt my legs, waist, and feet though I have feeling on 2 spots of my feet but I can not feel my toes. I had an infection go through out my body which took all the insulation off of the nerves T4-T8. I only have partial use my left arm, my left wrist will not turn over and my left hand will not grab nothing less than a hot dog. The funny thing is I can stand to pivot but walking is almost impossible. I talk to my legs to get them too move. I have no feeling and can not tell heat or cold on my legs. I’m constantly rubbing my knees there’s no hair left on my knees. I also have the spasms in my legs when I lay down flat in the bed, my bed has to be reclined all the time. And unfortunately I have to wear adult diapers for my incontinence and I have a catheter in full time. I try to sit on the toilet at the same time everyday. Sometimes it works and sometimes it don’t. Usually I sit there for about an hour before I either give up or I have actually done what I’m supposed to. This is the hardest thing in my life being dependant on others. I was always the person helping others and now it’s the other way around. I miss most is working and my Independence where I could just get in a car and go someplace. I’m 50 years old I was very motivated I am now gaining weight from being in the chair because not getting any exercise like I used to. Thankyou for your article it’s helped me to understand a little more than I did before. God Bless you and your family.

A Little About Me

In March of 2009, while expecting my 6th baby, I contracted Transverse Myelitis - a rare illness that left me paralyzed from my ribs down. It has changed my life in many horrible and wonderful ways. I love to talk about it all. The good, the bad and the ugly.

It is always raw and real around here as I share my work in advocacy and accessibility, my heart for the spiritual lessons learned, music that speaks my soul, and my love for my home and family.

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